Part 2: Stroke victim optimistic

Pamela Fayerman, Vancouver Sun05.16.2012

Jack and Hilda Orange in their Nanaimo home on Wednesday, March 14.Chris Koehn
/ Daily News

Jack Orange is helped back into his wheelchair by wife Hilda, right, and caregiver Tasha Hodi, left, taking a short walk around the house with his wheeled walking assist platform on Wednesday, March 14. Jack is determined to walk again after suffering a debilitating stroke.Chris Koehn
/ Daily News

Jack and Hilda Orange in their Nanaimo home on Wednesday, March 14.Chris Koehn
/ Daily News

Jack Orange is helped up from his wheelchair by wife Hilda, right, and caregiver Tasha Hodi, left, to his wheeled walking assist platform on Wednesday, March 14. Jack is determined to walk again after suffering a debilitating stroke.Chris Koehn
/ Daily News

Jack and Hilda Orange in their Nanaimo home on Wednesday, March 14.Chris Koehn
/ Daily News

Hilda Orange attaches braces to her husband Jack's knees in preparation for a short walk in their home with his wheeled assist platform on Wednesday, March 14.Chris Koehn
/ Daily News

Jack Orange is helped up from his wheelchair by wife Hilda, right, and caregiver Tasha Hodi, left, to his wheeled walking assist platform on Wednesday, March 14. Jack is determined to walk again after suffering a debilitating stroke.Chris Koehn
/ Daily News

Jack Orange is helped up from his wheelchair by wife Hilda, right, and caregiver Tasha Hodi, left, to his wheeled walking assist platform on Wednesday, March 14. Jack is determined to walk again after suffering a debilitating stroke.Chris Koehn
/ Daily News

Jack Orange is encouraged to take small steps by wife Hilda, right, and caregiver Tasha Hodi, left, on Wednesday, March 14. Jack is determined to walk again after suffering a debilitating stroke.Chris Koehn
/ Daily News

Hilda gives her husband Jack Orange a hug aboard the air ambulance in this 2008 photo. Interviewed recently with his wife Hilda at the G.F. Strong Rehabilitation Centre in Vancouver — where Jack is an outpatient — the couple spoke about the health care approaches Jack has taken on his road to recovery.ian lindsay
/ Vancouver Sun

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Four months to the day after his paralysing brain-stem stroke, Jack Orange left Kamloops’ Royal Inland Hospital and was put on an air ambulance to Vancouver so he could begin an intensive program at G.F. Strong Rehabilitation Centre.

It was Dec. 4 last year and it was a monumental day as Jack’s wife, Hilda, had been pleading for months with doctors and health authorities to allow the transfer so Jack could benefit from the centre’s renowned expertise. He’d get five hours of various therapies a day, compared to the spotty amount Hilda complained he was getting in Kamloops.

Jack was full of optimism as he settled quickly into his third-floor room in the 92-bed facility.

The room affords the veterinarian a view to the outside so he could see what winter is like in Vancouver, compared to his tiny community at Horsefly, near Williams Lake.

As of today, it is seven months since he was last in his own home perched over the 100-metre-deep Horsefly Lake. He can only imagine the ice now covering it, his neighbours cross-country skiing across it, and the lake's abundant char, rainbow trout, Kokanee and Dolly Varden swimming in the deep parts.

“Life was beautiful for us and Horsefly was our own little paradise, but it’s so isolated and removed from medical facilities so I’m not sure we'll ever go home,” says Hilda, dabbing tears away from the corner of her blue eyes. “But that’s Jack’s goal — to go home one day and even go back to work. I’m just thankful we are moving on and making progress.”

Jack spent three weeks in intensive care, and four months altogether in the Kamloops Hospital before coming to Vancouver.

Hilda says there were days when Jack had either no therapy or just 10 minutes of it in Kamloops.

“There were days when therapy was done in the hallway or at his bed with three other patients around. Everything I heard or read about stroke recovery said that the earlier rehab begins and the more you get, the more likely it is to get recovery,” she says, referring to her rush to get Jack into G.F. Strong.

In Kamloops, she never got the feeling that anyone had any optimism about his recovery and she was encouraged to check out hospices and extended-care facilities.

“We worried that he was going to be sent from the hospital to an extended-care old folks home and there is no way I am going to allow him to be thrown into that kind of place,” she says sternly.

The difficulty in getting to G.F. Strong related to its strict admissions policy that requires new patients to be medically stable, in need of services not available in their respective communities and to show promise of improvement. When Jack finally met all those requirements, administrators at G.F. Strong allowed him to come.

“Unfortunately, rehabilitation resources are limited and they have to be rationed to those who will benefit the most so that we make the best use of the available resources,” says Dr. Jennifer Yao, a specialist in physical and rehabilitation medicine who is Jack’s doctor at G.F. Strong.

“There was some reluctance in the beginning to bring him here because it was difficult to tell which way Jack was heading when he was in Kamloops as he was very ill for quite some time,” Yao admitted in an interview.

“From my perspective, I could understand why they would struggle with his needs there and while they do have speech and physio in Kamloops, it’s a question of intensity. To be honest, we even struggle with that here,” Yao said, referring to the fact that health care providers always wish they could do more for their patients.

When Jack regained some mobility in his left arm, hand and fingers, it became evident he could learn how to communicate with assistive technology devices.

One is a portable device called a Lightwriter that enables Jack to type words that are not only displayed on a screen but also sounded out with a computer-generated voice.

“It’s a good communication system for active minds like Jack has,” says Anne MacCallum, a speech language specialist involved in his rehabilitation at G.F. Strong.

Jack has little mobility on his right side so he cannot stand unsupported, but he can now operate the controls of an electric wheelchair with his once-paralysed left hand.

Asked whether Jack’s goal of eventually walking and talking is realistic, Yao says: “The goal is not unrealistic, but you need to look at the time frame. We don’t have a slow stream rehab facility in B.C. where people can go for six to 12 months. This place is designed for rapid rehab of durations of about three months.

“Jack is on a steep recovery curve, which is nice to see. Will he speak and walk again? I don’t know, maybe that depends on how you define speaking and walking. It’s not an all-or-nothing phenomenon,” says Yao.

“There are people who reach the dreaded plateau where recovery slows or stops but everything doesn’t stop or slow all at once. Maybe speech continues while mobility slows or vice versa. In strokes, we generally see rapid recovery in the first six months and then slower recovery which continues for two or three years. Because Jack’s slowly changing at a decent rate, that’s a good sign that he will experience more recovery,” adds Yao.

Some brain cells regain function While it used to be thought that brain cells could never be repaired or regained, advances in brain-imaging techniques have allowed scientists to learn about the plasticity of brains.

Some brain cells actually regain function after strokes. Indeed, there are cells that surround a damaged area and start to take on the functions of the damaged cells.

“Dead neurons don’t regenerate but remaining neurons try to branch out and make new connections and activate pathways not being made before,” explains Yao.

“I am lucky to be alive,” is an oft-repeated, upbeat phrase Jack has spelled out since coming to G.F. Strong.

Because he has made many strides, he doesn’t want to leave until he can walk and talk. His positive attitude is infectious and Jack’s son Jon, a French immersion elementary school teacher who lives about an hour outside of Vancouver, says his dad’s optimism helps make his all-day Sunday visits with him enormously joyful.

“My dad’s the kind of guy who has never looked for shortcuts so I’m not surprised he’s working so hard at his recovery. To see him smiling and persevering the way he is, is so amazing. It makes it easier to visit him.”

On their Sunday visits, the father and son arm-wrestle so Jack can show his son how much stronger he’s getting each week.

They go down to the pool room, where Jack sinks the balls in the pockets by rolling them across the table.

They watch movies together and also go to the Safeway a block away and sit in the store’s Starbucks cafe.

“Before these improvements, every time I visited him, I would cry and so would he, but now there are new developments every week. I can’t believe how strong he’s getting on his left side,” says Jon in an interview.

Jack’s coughing reflex has rebounded but his swallowing function has not yet fully recovered, so he still has a tracheostomy to prevent him from aspirating his saliva secretions.

During the day, the tracheostomy is plugged to gradually wean him off it.

His speech therapist has worked with him daily to the point where he is now able to talk a little when the tube is plugged.

Yao is hugely optimistic that the tracheostomy will soon come out.

Jack still has a feeding tube hooked up to his stomach and is fed a liquid diet four times a day.

Food will not be introduced until health care providers are convinced he can swallow even mushy baby foods without choking. Since bowel and urinary incontinence is another problem, he has a catheter and an incontinence brief.

In physiotherapy, he stands in a frame that supports him while therapists encourage him to lean forward and backward to engage his abdominal and back muscles.

His right side is lagging far behind in mobility and functioning.

Nearly 8,000 B.C. residents suffer strokes each year.

Nearly 7,000 are serious enough to require hospital stays while the balance may need either no hospital stay or a brief visit.

Of the total number, nearly 2,000 patients die within a year after the stroke.

It’s estimated that about half of stroke survivors will be left with some kind of permanent disability.

Strokes impact brain cells that send the signals that control almost every function in the body, so balance, coordination, vision, cognition, speaking and swallowing may all be affected, and there may be limb paralysis, stiffness and weakness.

Brain-stem strokes and especially those causing locked-in syndrome, which Jack initially had, are said to be the most unusual.

Dr. Philip Teal, B.C.’s leading stroke neurologist and director of the B.C. Centre for Stroke and Cerebrovascular Disease, said he has seen less than three dozen patients with locked-in syndrome in the 17 years he’s been at Vancouver General Hospital, the major stroke referral hospital for patients from all over the Lower Mainland.

But Teal, who has never met Jack, says he’s had a few patients who initially suffered locked-in syndrome after brain stem-strokes and then made seemingly miraculous recoveries.

One of these was a Vancouver businessman who suffered a stroke in his New York City hotel room. Because he had a ‘do not disturb’ sign on his door, no one discovered him until the mini-bar clerk entered the room to check the fridge two days later. The man was rushed to a Manhattan hospital and once he was stable, transferred back to Vancouver.

“The patient who collapsed in his New York hotel room has made an exceptional recovery and he lives on a hobby farm in the Fraser Valley with his wife,” says Teal.

“The spectrum of disease seems to depend on the severity of damage in the brain stem. The neurons have some regenerative capacity but it’s the axons that are taking the motor impulses from the brain through the brain stem to the limbs and if you have a stroke in the brain stem, it’s like cutting the motor wires. So if the damage is not irreversible, then some axons can get progressive recovery by making new connections,” Teal said in an interview.

“If critical pathways are totally destroyed, then no amount of rehabilitation can can restore mobility. But you just have to ride it out,” adds Teal, referring to the fact that recovery — or as much as one might ever get — can take a few years.

“Unfortunately, there aren’t any drugs or agents to change the course of events on the recovery side. On the rescue side of stroke treatment, there are things we can try to do like open the arteries to restore blood flow [using clot-busting drugs, or surgically removing clots] to salvage the brain. But we are desperately in need of something that promotes recovery, which is why stem cells or agents known to boost the production and regeneration of stem cells to stimulate repair are under investigation,” he says.

Sometime later this year, VGH expects to enrol patients in a trial in which consenting stroke patients will get an oral drug that may promote the production of stem cells to stimulate repair.

They will be patients who have had a stroke in the previous 24 to 48 hours, so Jack would not be a candidate.

In a small pilot study in the U.S. that Teal is monitoring as a member of the safety board, investigators are seeing whether an electric current stimulator to fire up the motor cortex in the brain can help promote recovery.

Stem cells and stimulators are a world away for Jack, but he is resolute in his determination to recover, even banging his fist down recently before spelling out, “I will be going back to my job in Williams Lake.”

Yao, who is the medical manager of the acquired brain injury program at G.F. Strong, believes Jack will benefit from a lengthy (nine to 18 months) stay at the Halvar Johnson Centre for Brain Injury in Ponoka, Alta., a 48-bed inpatient facility where people with non-progressive brain injuries can go for long-term rehabilitation.

The centre has a handful of beds designated for out-of-province patients, and the B.C. government covers the costs since there is no such facility in B.C.

In the fiscal 2007-08 year to date, six B.C. residents with acquired brain injuries have been sent to the Alberta facility at a cost of $611,358 to date.

In 2006-07, eight B.C. patients were treated there at a cost of $662,531, according to Ministry of Health figures.

The daily cost of care at the Alberta facility is $720.

Stroke is one of the most expensive medical conditions, costing the B.C. economy hundreds of millions of dollars.

Jack’s hospitalization costs alone, based on nearly seven months in hospitals and facilities like G.F. Strong, is so far estimated to be at least $500,000, not including medications and emergency health services.

While Hilda recognizes that G.F. Strong is not funded or designed to be a long-stay facility, she is petrified about what will happen when Jack has to leave, as health professionals there have done so much to help him progress this far.

She’s also nervous about having to take Jack outside the province, away from friends and relatives who cheer him with their frequent visits.

“Why do we have to leave our own province?” Hilda asks rhetorically, during an interview.

Yao said the referral has been completed and it has been accepted by the Alberta facility administrators.

“Yes, we have heard that Jack has been accepted to Ponoka. We are waiting to hear when the bed would actually be available. Hilda is anxious about the move as it is another change for them and she will have less family supports in Ponoka,” she said in a recent e-mail.

“As for Jack's progress, he is continuing to do well. He has gotten over a cold and is progressing with weaning of his tracheostomy. He can tolerate having his trach plugged for several hours at a time. This allows him to speak so it has helped significantly with his communication ability. His speech is still very slow and sometimes difficult to understand due to problems with his vocal cords and coordination of the muscles to produce correct sounds. Overall, I am quite pleased with his progress to date,” she added.

Whenever Jack hears about Ponoka, he gets agitated.

As a small town 59 km north of Red Deer and 95 km south of Edmonton, it is clearly not a place where he’ll be able to enjoy his son’s weekly visits.

Nor will he be able to go on the kind of recreation trips that G.F. Strong organizes for its clients — especially the exhilarating ones where the veterinarian can see animals, like the 60 tropical birds at the Bloedel Conservatory and the marine animals at the Vancouver Aquarium.

But B.C. lacks a facility where stroke patients can go for long-term rehab.

And while public health strategies focus on preventing strokes, it is impossible to prevent all of them.

Indeed, Jack’s stroke was the kind caused by a cruel twist of fate — a silent, undetectable heart condition — not by an unhealthy lifestyle.

Doctors like Yao are unhappy about having to send patients out of the province for long-term rehab. She says: “The fact is, thousands of people will have a stroke in B.C. every year and we need the resources — services, health care providers and infrastructure — to manage the aftermath of their stroke. With the aging population, the problem will only get worse.

“We are getting better at treating strokes and saving lives, but what kind of life do stroke survivors have to go back to? Getting necessary rehabilitation services can improve stroke survivors' ability to function on a daily basis. It could mean the difference between being able to live independently versus being in a facility. Even if rehab can't save someone from going to a nursing home, it can still improve the person's quality of life and lessen the burden of care on families.”

Gaps in the system detailed B.C.’s lack of a stroke strategy to prevent and treat strokes with universal protocols, and lack of facilities to properly diagnose, treat and rehabilitate patients is well recognized by stroke experts.

That’s the reason why groups like the Heart and Stroke Foundation and Stroke Recovery Association recently submitted a report to government detailing the gaps in the system and identifying needs.

“In B.C., stroke survivors, their caregivers and families do not benefit from an organized, well-designed high-quality rehabilitation system that could maximize recovery and reduce disability and handicaps,” states the report called Innovations in Stroke Care by the Heart and Stroke Foundation.

Mark Collison, director of advocacy for the Heart and Stroke Foundation (B.C. and Yukon), said that since the report came out late last year, a rehab and community reintegration working group has been struck as part of the provincial stroke steering committee. “This group is organizing a provincial rehabilitation collaborative in the spring which will bring together provincial leaders in rehabilitation to develop and recommend innovative approaches to build increased rehab capacity at the community-based level.

This plan will then be presented to the government before the fall of 2008 for consideration,” he said in an interview.

Jack’s plight, in not being able to stay in B.C. for long term rehab, is far from unusual.

“Stroke care is really the poor cousin of heart disease and cancer,” said Collison.

“Proportionately, the resources that go towards stroke care pales in comparison to these other two diseases,” he added.

While stroke advocates believe the gaps in stroke care are finally at least on the agenda of health system funders, solutions to problems like the lack of a slow-stream rehab facility where B.C. residents like Jack need to go, will take many years to solve.

“There are long-term care facilities, some of which can offer a bit more rehab services than others, but are not necessarily rehab focused,” said Collison.

“Ponoka has been accessed for acquired brain injury patients that require long-term rehab (12 to 24 months) to gain independent living skills such that they might be able to return to community living.

Such referrals are made for patients who are improving but at a very slow pace. In comparison, a typical length of inpatient rehab at G.F. Strong is closer to six to 12 weeks.

“Cutbacks in outpatient services have been more the rule over the last decade, not expansion. To compound this, the intense pressures in acute care have sometimes resulted in early and inappropriately premature placement of stroke patients in nursing homes,” said Collison.

The Interior Health region has contracted with a development company to build and manage 16 specialized slow rehab beds.

But the facility is not expected to be built until next year, which means Jack and Hilda will have to move to Ponoka sometime in the next two to four weeks. Yao understands their extreme reluctance to go.

“The whole team here at G.F. Strong is aware of the tremendous stress that Hilda is experiencing and all that she has gone through to get to this point. Unfortunately, the health care system is not quite able to deliver exactly what individuals may want, when and where they want it. Jack's case is a good example of how stroke impacts not only the person, but his whole family,” she says.

For now, Jack enjoys sitting in a nearby Starbucks savouring the aroma of coffee, which he often fantasizes about drinking again. He was sipping coffee in the minutes before his stroke last summer, but, an eternal optimist, he doesn’t dwell on negative associations.

On their outings to the Safeway store, Hilda might buy another package of candy to add to the stash on a table in Jack’s room.

The collection is the real prize.

It’s the stuff he dreams about eating one day.

And it’s there to remind him that when he recovers muscle control in his throat so he can handle saliva secretions and regains respiratory muscle control, his tracheostomy can come out.

And when he can chew food and talk again, he’ll say to Hilda: “Pass the Licorice Allsorts, honey.”

If, if, if ... the more skeptical, casual observer thinks.

But Jack Orange will have none of that. He doesn’t think about ifs. For him, it’s all about when.

kpemberton@vancouversun.com

Empowered Health is broadcast Thursdays on CJDC at 11 a.m.; CHEK-TV Vancouver and Victoria, CFJC and CKPG at 7 p.m. and CHAT at 7:30 p.m. The show is broadcast Tuesdays on CFTK at 11:30 a.m. You can also view episodes online at vancouversun.com/empoweredhealth

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